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My daughter who was diagnosed a year and a half ago w/Celiac, seemed to do great for exactly a year gluten-free, then she started getting bad stomachaches again and headaches. I started her on the SCD diet and also removed dairy. All of her symptoms went away. We now follow the Paleo diet pretty much, which is grain free and dairy free. It is just very hard to follow for a 7 yr old. Lately she has had stomachaches again and some mild D. I'm hoping that it is just a stomach bug that has been going thru our house and not the return of symptoms yet again...
It sounds like you have already done some research and I don't know if you've read the Specific Carbohydrate Diet by Dr. Haas, but it could be very beneficial and enlightening. Also, The Paleo Solution by Robb Wolf is VERY good, as well. Good luck to you!

Thank you so much for this post. I just finished messaging another advanced member about my daughter's recent symptoms. She is 7 yrs old and was diagnosed a year and a half ago w/Celiac. She was doing great on the gluten-free diet for almost exactly a year to the date and then she started getting horrible stomach pains and bad headaches. Her GI suggested taking her off of lactose to see if it would help. It didn't. I started reading about the SCD diet and Dr. Haas' research and decided to take her off of ALL grains and also dairy which almost immediately seemed to work. Her symptoms went away. I tried to reintroduce rice and rice pasta a few weeks later and after 4 days of one serving a day, her symptoms returned. I also tried separately to reintroduce casein and the stomachaches returned as well. I am baffled that she could be doing so well and now she is so restricted on what she can eat. She also cannot tolerate corn so she is basically now following the Paleo diet: protein, vegetables, fruit, no grains...also, no starches, no corn, no dairy....VERY hard for a 7 yr old.
Over the past couple weeks a stomach bug has been going around our house where we feel pretty good until we eat something and then we get abdominal gurgling, loose stools, mild stomach pain, and loss of appetite. Most of us are recovered and pretty much back to normal, except for our daugher who is still having a lot of stomach pain and just doesn't feel good in general. I'm scared that her symptoms are now returning again since it is taking her so long to get over it. Have you found that following the SCD diet can possibly be temporary and then you are able to return to a "normal" gluten-free diet or is this a permanent solution? Dr. Haas talked about doing it for a number of years and then being able to return to normal foods. Thanks for any advice you can give!

I am halfway thru the Paleo Solution book by Robb Wolf. It is one of the most eye opening books I've ever read. I started reading it because my daughter has Celiac and her symptoms have returned after being gluten free and symptom free for a year. Our whole family is now going Paleo. It is hard and is taking some time to get used to, but I'm hoping it is the answer to healing.

My daughter, with Celiac, who is now gluten, grain and corn, dairy, and chocolate free, gets headaches when she has something that she has an intolerance to. They usually last as long as that food is in her system. Most of the time they are also accompanied by stomachaches too, if not then sometimes they are caused by an on coming sickness. She has been getting a lot of headaches lately that we are trying to figure out...

I agree. My daughter is now gluten, corn, grain, dairy, and chocolate free. People ask what we eat, all I say is thank God for almond flour! She/we live off of the almond muffin of the day, protein, veggies, and fruit. Although, I tried to reintroduce rice 3 days ago and now she is sick again. So yesterday we went back to grain free. Hoping that that is it and not something else. This is getting really tricky. Anyone else out there tried or have done the Specific Carbohydrate Diet for any length of time with success? I don't mind doing it, as long as I know we are on the right track to healing! Reading and trying the Paleo Solution Diet right now, very similar.

Thanks for your post. I just tried reintroducing rice in my daughter's diet and she now has stomachaches and headaches again. It is reassuring to know that this is probably the cause and not some other "mystery" issue. So hard to narrow down all the different intolerances. We thought we had it all figured out a year ago when she was diagnosed with Celiacs, then this past January the symptoms returned....

Hi,
I'm a mom of a 7 yr old with Celiac disease. She was diagnosed in Jan. of 2010. Almost 1 yr to the date, this past January, her symptoms seemed to return after being gluten-free for 1 yr. We know that she was not getting any gluten because her blood tests were coming back normal and we are very careful. After 3 weeks of bad stomachaches and headaches we started 2 elimination diets at the same time in order to first stop the hurting, then we would figure out which one or if both, were working. We found that she definitely has a casein intolerance now...out of the blue it seems. The second elimination was cutting out all grains and following the Specific Carbohydrate Diet. All of her symptoms pretty much disappeared for 2 weeks. After which I tried to reintroduce rice to see if this could be tolerated. She seemed fine with it after eating some rice pasta, her favorite. The next day I gave her a gluten-free rice waffle for breakfast, again, she seemed fine. The following day I gave her baked french fries which she also seemed to tolerate. Then 2 days ago the stomachaches and headaches returned. Yesterday morning was the last time she had any rice, a waffle for breakfast. Since then I've taken her back off of all grains and starches, but am worried that maybe it is something else. Time will tell. I'm nervous that maybe she has another autoimmune condition that might be causing her problems. I just find it strange that she was doing fine this past year and then all of a sudden her symptoms returned with a vengence. Has anyone else experienced this?? We are all now strictly trying the Paleo/SCD diet in our house and cooking all baked goods with almond flour. It is really hard to do without the "filler" we are accustomed to ie)rice, gluten-free pasta, gluten-free breads, especially with kids. Would love any advice from others doing the same thing and if you have seen a decrease in symptoms and how long it took to feel better again. Thanks!!

Thanks everyone for all the responses. Her stomach aches have gotten better, however, she is constipated a lot now. She never had this problem before going gluten-free. Any suggestions for this and/or has anyone else had this problem? We have taken her off dairy too, for the meantime. Do most use Probiotics? I have some that we used to give her in the fridge and have just gotten lazy about it, but will reintroduce if most think this is helpful and necessary. If you are using them, how much a day do you give your child? We have a 6 year old.
As far as traveling goes, I think I might cancel the part of our vacation where we are staying in a hotel room. I'm pretty sure that they do not offer microwaves in the rooms, even though it is a very nice resort. Probably because they want you to use their restaurants. Just don't want to deal with cross-contamination while on vacation. We ate lunch out today and didn't find out until it was too late that the corn chip she was eating was not actually gluten-free...so frustrating. The poor thing has been itching all night now and has a headache. Overall though, she has been doing much better.

Our daughter had a positive blood test and we debated heavily about going thru with the endoscopy. My thoughts were very similar, but she also had symptoms. Having had the test done, I am glad that everything was reconfirmed, especially since most doctors seem to not fully diagnosis until you have the biopsy done. My deciding factor was that she could have had other underlying issues going on with hidden allergies and the doctor wanted to make sure that her esophagus and stomach did not show any damage, as well. The biopsy of her intestines came
back postive and everything else was normal, which was a relief. If you are going to do it, I would definitely recommend doing it now instead of later, before your child has been off gluten for awhile. It really is a pretty simple procedure and is done in like 15 minutes. All
the doctors and nurses were great and treated her like a princess too.
I hope this helps.

Our daughter was just diagnosed 3 weeks ago and we have 'made the leap' into the gluten-free world. I have decided that our house has to be pretty much gluten-free because it is just too hard to deal with the cross-contamination. My husband and I still have wheat crackers that we eat VERY carefully and clean up very well after we eat them. I also keep a loaf of wheat bread in our freezer that we use for occasional sandwiches. Luckily our daughter was never really a big bread person anyway. We just had to do a birthday party for our other daughter, who is not Celiac, and made the new Betty Crocker cake mix. NONE of the kids knew it was any different and loved it!
The hardest thing so far for us has been limited options eating out, like today we went to Uno's after church because they have a gluten-free menu, but the pizza is really bad, their french fries are not gluten-free and after allowing our daughter to have a couple corn chips which I assumed where gluten-free, we found out that they weren't and sure enough, she has been itching all night and has a headache.
The other hard thing is managing school and parties there. It makes me sad that our daughter can never have the treats people bring in. I have notified her teacher, who is wonderful about everything, and think I will just volunteer to be the one to bake the goodies for the
holiday parties at least. That way EVERYONE can have them and no one is singled out. That is really hard for me, but our daughter has been so good about it.
Once you get your mind set and the adjustments made, it really is not that hard to substitute ingredients, etc. It just takes a lot more time to make things that I would have normally bought. On a positive note, at least our family will not be eating processed or fast food anymore. Our kids will grow up eating healthier than most!

Hi Sherri,
It just dawned on me, and I know that your original post was definitely awhile ago, but I noticed the photo of your dog and was wondering if your dog food is gluten free?? I ask because we have two dogs (Amstaf and pitbull/boxer mix, both of which are the sweetest dogs I know) and I am switching to gluten-free food for them because of our daughter who is Celiac.
Hope this helps!!

We just had the biopsy done last Friday that came back as a definite positive. She has never had any rash or any lesions associated with the itching, it just seems to be an all over type of itch that seems worse on her arms, behind her legs on her stomach, and her back. We ran blood tests while she was having the endoscopy to check her liver and kidney function, which I was also concerned about, and they thankfully came back normal. Her itching still has not gone away though. The first time we had her off gluten it did seem to really subside, but not so far since we've had her off the past 9 days....stomach aches haven't completely gone away yet either. Wondering how long it normally takes for symptoms to subside or if this is definitely a case of cross contamination. I guess it is hard to tell so soon.

It is very possible that she is coming into contact with it at school. Any recommendations on how to handle this diplomatically? It seems like a futile effort almost and I would appreciate any advice on what others have done. Thanks!!

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Celiac.com was founded in 1995 by Scott Adams, author of Cereal Killers, founder and publisher of Journal of Gluten Sensitivity, and founder of The Gluten-Free Mall, who had a single goal for the site: To help as many people as possible with celiac disease get diagnosed and living a happy, healthy gluten-free life!